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-   -   New here! Why do people stop their medication? (https://www.neurotalk.org/peripheral-neuropathy/216907-people-stop-medication.html)

canagirl 03-04-2015 02:31 PM

Please help! what were your side effects?
 
Hello,

I am new to this. I have extreme burning, tingling, prickling and twitching all over my body. I am very nervous about medication (all over body twitching and restless legs started after a medication for another reason and HAS NOT STOPPED FOR A YEAR). However, I am in excruciating pain all over. I need some relief.

When I read about medications on here many people state " I had to stop due to horrible side effects" but nobody states what those were. I feel like at this point I could put up with a lot if it took away the pain. What I can't cope with is some of the more serious ones like ataxia, akasthesia, and movement disorders. Has anybody experienced horrible permanent side effects from Elavil, nortryptiline , lyrica or gabapentin?

canagirl 03-04-2015 02:32 PM

Which medication seems to be the most helpful?
 
Hello,

Which medication seems to be the most helpful for people? I know it differs for everybody but I was just wondering if anybody has noticed a trend about which med works more often that not.

canagirl 03-04-2015 02:41 PM

New here! Why do people stop their medication?
 
Hello,

I have read many posts about people stopping their medication even though they say it was helping them. why is that? did the pain get better? I'm in sooo much pain right now I can't imagine stopping something that helped. I am not on medication right now but the pain is unbearable and I really need to try something. I am already taking supplements but they don't seem to be helping (r-lipoic acid, "nerve fix", vitamin e, vitamin c, vitamin d) I was taking b12 but my dr said my levels were very high so to stop that.

Does the pain get better? It's been about 6 months of pain and it's only getting worse. I really need to know if it gets better for most people or only worse?

Kitt 03-04-2015 02:56 PM

Welcome canagirl. :Wave-Hello:

Enna70 03-04-2015 02:59 PM

Welcome....
As for me the reason I stopped prior medication because the side effects were too much to handle. For me the pain wasn't gone either, just different. But as my conditions worsened I had to find something to calm the flames. That's me anyway...:grouphug:

Susanne C. 03-04-2015 03:16 PM

Everyone is very, very different, and we look for commonalities here to try and help each other. Some of us fall into the diabetic neuropathy category, some hereditary, some toxicity, and many, many idiopathic. It may as well be idiosyncratic because it certainly is!
If you could tell us more about your symptoms, their duration, any instigating causes- medications, surgeries, damaged discs, etc., anything that makes it worse, and any diagnostic testing you have had done we might be able to help.
You will find knowledge, empathy, and kindness here.
Medications are generally discarded when they do more harm than good. Neuropathy is hard to treat and the things which can touch the pain carry heavy side effects. Just finding a combination of medications which may provide a 40 or 50% reduction in pain levels can take years of experimenting.
If you have a progressive condition, then it is reasonable to assume that the pain will get worse. On the other hand there is a certain amount of getting habituated to pain- sensations that are unusual and distracting like numbness and pins and needles become the new normal. Sometimes you learn what foods or activities make things worse, so there is an up and down process.
Welcome to the forum and please tell us more about yourself.

canagirl 03-04-2015 03:40 PM

thanks for the responses.

I have a long story. I took a medication that caused body wide jerking and twitching that never stops (literally happens 100 times a minute all over my body internally). On my quest to help myself (cus drs said I had anxiety, which I have never had and I had NO stress in life) I saw a naturapath that ran a microcurrent of electricity through me. She said that it's supposed to release toxins from cells so it would flush out any residual medication. Big mistake. By the time I got home I had tingling, prickling and severe burning all over my body. Over time the burning subsided a bit. However, I still had all those symptoms. Not having learned from my mistake I kept searching for help. I turned to an acupuncturist. after 8 sessions I stopped b/c the intense burning returned along with severe throbbing in the areas where needles were inserted. That was two months ago. I know have intense throbbing, burning, prickling, tingling, twitching, jerking and electrical feelings all over my body.

Tests
head mri
neck mri
total back mri
eeg
emg - carpal tunnel in right hand
bloodwork - (off the top of my head) vitamin d, vitamin b12, ana, copper, igg iga, magnesiusm, calcium, potassium, glucose, lyme, female hormones, testosterone, tsh, t3, t4, and many more I can't remember now
Urnine - norepinephrine, cortisol

EVERYTHING COMES BACK NORMAL

I am in excruciating pain, head to toe. I need help....I cry all day, everyday. Qaulity of life is zero. Nobody understands.

canagirl 03-04-2015 03:41 PM

also, what are the horrible side effects people experience and on what medications? I can put up with a lot of side effects if they take away the pain. What I'm worried about are the serious permanent effects like, akasthisea, ataxia, movement disorders... Anybody experience anything really bad like that?

canagirl 03-04-2015 03:48 PM

fyi - im only 30

Jomar 03-04-2015 03:53 PM

You can use the search tool to find the various medications you are considering to find past posts on side effects or other issues.
http://neurotalk.psychcentral.com/search.php

We have medications forum also..
http://neurotalk.psychcentral.com/forum72.html


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